A very insightful post Rosie!!! I was a participant in the Ceregene clinical trial. I had a thrilling year. Here is a list of my improvements:

Energy level improved - able to eat meals and watch movies/tv without falling asleep (despite poor sleep patterns caused by PD meds).

Eye fluttering improved.

Foot drag almost completely resolved - still occurs during off times which have improved since Day 2. Gait and arm swing greatly improved. In fact, arm swings normally frequently throughout the day for first time in 8 years.

On times are improved Used to be off predictably during last 1-2 hours before each PD meds dose - sometimes off periods do not occur between doses

Levadopa more effective - virtually symptom free at various times - has not occurred in 8 years

Handwriting - Able to write faster and clearer

Keyboard typing - now able to use right hand

Food - Able to butter bread and cut food unassisted.

Able to hold phone to ear with right hand comfortably without fatigue

Able to shave and brush teeth with right hand without assistance from left hand

Able to get change out of right pants pocket

Feel better balance especially on stairs

Able to get in and out of car much faster

Able to give wife foot massage with right hand for first time in 2 years

Drooling less and swallowing better.

Mental outlook improved - happier, excited about the future for the first time in 8 years

Facial expressions have improved according to my family

Treadmill - Able to walk normally for 45 minutes with no foot drag!!! Before surgery, I could manage a few minutes before I would have to rest for a minute.

By the way, at my facility, only one person got the sham (placebo) surgery. That one person was ME!!!!!!!!!!!!!!!!
I imagined it was real and I improved my condition.

In my opinion, researchers are going to have to come up with a way to evaluate patients without human intervention. UPDRS scores are based on the judgements of a human being. I was such a cheerleader for myself I can't imagine I didn't influence the scores that were recorded.

I asked one of the scientists at Ceregene if the placebo group showed no improvement would the study be deemed a success - he said YES!!! On the other hand, how much of the improvement demonstrated by the treatment group was the placebo effect?

In my opinion, the treatment group and placebo group should be watched for an additional 12 months where a clear difference should reveal itself. The problem is that the study was unblinded very quickly. You can imagine the range of emotions I have felt since I heard the news. I am trying to remain positive by spreading the word about the power of placebo thinking but I also know there are 20 people with advanced PD walking around with two holes in their skull and visible scars on their skin who may never see the real treatment.

Researchers at Ceregene and MJFF have told me that an in-depth analysis of the stats would be performed over the coming weeks. One question I have which has not been answered is: How many folks from the treatment group have eliminated their meds? I know of at least two and I imagine there is more. I doubt anyone from the placebo group can make that claim.

Bottom line: this may turn out to be an effective treatment for some which most likely means back to the drawing board while we wait. For my fellow sham participants, this is a tough pill to swallow although I had a thrilling year and would do it all over again if I could!!!